Hi Anita,

The simplest explanation I can offer is that MS affects the central nervous system (brain and spinal cord), whereas GBS affects the peripheral nervous system (all the nerves traveling through the arms, legs and face). My fiance and I have a good friend who was hospitalized with MS a week before Ben was hospitalized with GBS. From his description of his symptoms, you’d think the two had identical illnesses; however, a year later, Ben is walking, and our friend is still in a wheelchair. When Ben was in the ER being diagnosed, he was tested for MS. Likewise, when our friend was in the ER being diagnosed, he was tested for GBS. Fatigue is very common in GBS, but if you feel that your symptoms are starting to become worse, you may want to visit your local ER.

By-the-way, Ben had the flu for two weeks before he came down with GBS, and the first signs were severe pain in his back with numbness and tingling in his toes, finger and lips, spreading throughout his body. After four days, he went into respiratory paralysis and ended up on a ventilator for three weeks.

Take care,

Shannon

Dear Anita:

If you think that the GBS is still active then you should be getting treatment for it. The treatments are Intra-venous Immuno Globulin or IVIG or Plasma Pherises or PP. Both treatments reset your immune system so that it stops attacking the myelin sheath which surronds your peripheral nerves. They are also tremendously expensive so you need a doctor who isn’t just a lapdog of the insurance companies.

In any case. You need to get yourself to the ER immediately if you have any difficulty breathing. GBS can be super fast and you may not be able to rescue yourself.

You may want to explore the difference between GBS and CIDP. GBS is acute and episodic. In other words it happens pretty severely and usually, but not always, once in a lifetime. CIDP is sometimes refered to as a chronic form of GBS. CIDP is sometime misdiagnosed as MS because the symptoms are similar. The differential test is an MRI of the brain looking for lessions, and sometimes a nerve biopsy.

I wish you luck and I hope you can find out what is wrong with you.

Lee

Hi Anita,

I new a co-worker who went through that type of MS with his eyes. Very strange onset, yet he recovered his sight too. I understand the med field has come along way in that area, and I also understand that MS, regardless of type, is a lifetime issue. You would know better then I. All of the symptons you do describe, fit for MS too, if I’m not mistaken. I can tell you that GBS doesn’t hang around for years. So as close as you can get to GBS, is what’s happening right now with regards to your condition. From 1999 till around 3 weeks ago, there was no GBS. Is there now? It appears nobody knows. These two, along with many other neuropithies, have the very same symptons. That’s why confusion reigns so much for everyone involved. Your last sentence in the post below, points to the doctor as treating your symptons as part of MS all along, and still is. One of the ways to diagnose GBS, is to rule out MS. Are you saying, or did the neuro, rule out MS, and without a doubt, seperate the two diseases? I hope you find answers and stick with your doc to get to the bottom of things.

Hello Anita,

I think everything I know has been already said. However, I was Dx with GBS a year ago and after visiting my Neuro yesterday my dx has progressed to CIDP. I will have 5 days of IVIG treatement next week and will probably have to have treatments every 3-6 months for a whil. This site, [url]http://www.cidpusa.org/[/url] , will help you understand CIDP better as well as show some links about mis diagnossed case.

Hope thios helps some
Stephen

Stephen, I am so sorry to hear about you being diagnosed with CIDP! My thoughts and prayers are with you.

Hi Stephen,

Sorry to hear that you have to go through more medical treatments and deal with the system that’s so good at draining people’s pockit books, but if improvement in quality of life is achieved, that’s all that counts and hard to be sorry for. As I have observed, the majority of CIDPers were diagnosed with GBS first. Over time really, is the only way to establish CIDP at that point. So, I cut a bit more slack as to what would really fall into a mis-diagnoses catogory. Anita, as I understand it, having a MRI in ’99 to rule out MS myself, a leision on the brain appears if
you have it. Every disease has it’s exceptions to the rule, but did your MRI show such a result? Has the doc also mentioned other polyneuropithies? I’m interested in why the symtons you describe, which are prevelent in MS, are being religated into a ‘something else’ standing.

Anita,

I’m so sorry that you have had such an awful time of it. I certainly hope that you will be diagnosed for certain soon.

Just a quick recap on my symptoms and illness. I started with a tingling in my toes, and I was told by the doctor to breath into a bag because I was hyperventilating. A few days later I was diagnosed with Bells Palsy because the one side of my face went lame. I then became extremely weak (unable to stand or sit up properly), was unable to go to the bathroom, and was unable to chew food or swallow. Finally a lumbar puncture was done, but before the results were in I was transferred to a larger hospital and upon arriving had trouble breathing. Finally they put me on a vent and after a number of days I had a trach. Some of the other symptoms during my decline was, my neck felt extremely stiff and the burning sensation started there, after that I remember burning, pain, numbness and pins and needles over various parts of my body. Please remember that obviously not all GBS patients end up on a vent or totally paralyzed.

I am thinking of you and hope that you find the answers you are looking for.:)

Anita, welcome to the gang!;)

I saw you had posted on the CIDP forum too, but had got no answers there. I guess most of us read both forums, but I want to be sure that as many as possible become aware of the site Stephen gave the address to – thank you very much Stephen, it was a most informative and interesting site with a whole lot of links that were just as interesting!:)

I therefore take the liberty to post the cidpus.com address on a new thread on the CIDP forum and on the UK forum as well – I guess you won’t mind, Stephen.

All the best possible to both of you from

Hi Anita, I came down with GBS in 2001. Was paralyzed for a couple of months and then went through phy. therapy and slowing recovered partially. The last few years I have had major weakness in my legs which is just getting worse. I dr. suggested that I may have MS also. Had the MRI which showed multiple lesions in my brain. The test for ON was negative. My neurologist believes that I most likely have MS and is just treating my symptoms for now. Put me on neurontin along with many other meds. It is interesting to me to talk with someone else who may have both GBS and MS. I am at a loss as to what to do next. Would enjoy hearing from you if you are up to writing.
Mary